Click here to share this page on Facebook

Sophia's Story

This is the story of a brave little girl who has Arthogryposis told by her Mum:

Image of Baby SophiaSophia is my little Daughter, who is now 16 months old. She is an absolute Joy, really a very special little girl. Here is her story so far, relating to her orthopaedic problems and her arthrogryposis. When I was 21 weeks pregnant I had a 3-D Scan, it was then I found out I was having a little girl, and also the Doctor scanning me could see that her feet appeared to be turned in. I did my best to try not to worry too much about her feet, what will be will be, and they can do so much now medically, I thought , we’ll fix them when she gets here.

Sophia was born on the 7th of December 2005, in Sligo General Hospital, by an elective caesarean section, she was breech position , and was born with her little feet up by her right ear! It took a few hours for her legs to start coming down to a normal position, her feet were clubbed, and her legs were stiff and her right leg seemed to stick out more than the left. But she was absolutely beautiful. 
Her problems appeared to be confined to her lower limbs, her upper body, arms and hands were fine. The physio team were up on the maternity ward almost immediately and starting stretching her feet and taping them, Paediatricians and Orthopaedic teams also were examine her daily. Her hips were dislocated also, but I was assured everything was ok, and everything was “fixable”. After about 3 days, it was suggested to me that Sophia be referred to the Orthopaedic team in Our Lady’s Hospital for Sick Children in Crumlin. 
So when I was discharged 5 days after her birth, we were headed straight for Crumlin.

Sophia was seen by Mr.Fogarty’s team the next morning, and it was then that they suggested to me there may be an underlying problem, that her legs and club feet were not just down to her position in the womb. It was then I really started to worry. The genetics team were called at this stage for their opinion. The first thing Sophia had done was a full Skeletal X ray. Then Mr.Fogarty came to examine her, it was then that I first heard Arthrogryposis mentioned and that it was a stiffness of the joints. To be honest it kind of all went over my head, he wanted to get started on her treatment for her club feet, so he sent us straight down to Olga the plaster care nurse. Olga was wonderful at explaining the Ponsetti method of casting and what the next 18 months or so of treatment would be for Sophia concerning her feet.
Image of Baby SophiaThey very gently manipulate the feet into position, and cast them; little tiny casts from her thigh down to her toes, her first cast were put on when she was 7 days old. It was then a weekly trip to Crumlin for cast changes for a total of about 12 weeks, then she had a little operation to release the tendons at her heel, into cast for another two weeks, and then she was into her Ponsetti booties, these are little booties that are attached by a bar, and hold her feet in position. Sophia had to wear her booties 23 hours a day, she did very well getting used to them, but she was a little put out by them! Physiotherapy plays a big part of her treatment, and we stretch hips and feet daily. To be honest I didn’t really think too much about the arthrogryposis, I just concentrated on her feet, one step at a time. They were happy enough to leave the hips as they were, and talk about them again later. The genetic team said they couldn’t see any genetic link to her condition so we were finished with them. Sophia had to have a 2nd operation on her heels to release the tendons again, and she was back in casts following that. From her feet point of view she has done well, they are pretty nice and straight, but because of the arthrogryposis, they are stiff. She is now wearing AFO splints on her feet to help keep the position they have achieved. She will more than likely need more surgery in the future on her feet.

Progress

Image of Baby SophiaIt wasn’t until Sophia turned about 10 months old that I started to find out more about Arthrogryposis, and accept that it would be part of our lives, it wasn’t going to suddenly go away. It was then I got in touch with the association. Arthrogryposis affects every child differently. So Sophia’s story is individual to her. No one can tell me how affected she will be, we just have to wait and see how she develops and adapts to her disability. 
Sophia has been very lucky with the wonderful care she receives from all involved in her care. Her development is delayed, in that she hasn’t crawled or isn’t rolling over yet, and although she is babbling a lot, she has no words as yet! She looks small for her age, but she was never a big drinker of her bottles, she is petite. Sophia has a brilliant team of professionals looking after her, I personally find the support good. She has an Early Intervention Team consisting of her Paediatrician, Physio Therapist, Occupational Therapist, Speech and Language Therapist, Social worker to provide support and advice, and a play support worker who comes twice a week to play and encourage Sophia’s development. So the next step in Sophia’s care is with the Neurology team in Crumlin. They will look at her development, and try to find a possible cause for the arthrogryposis. So , and MRI has been scheduled and they will be doing muscle impulse control tests and looking at her muscles, to try and see what is going on on the development side of things. 
She is a very happy, content little girl, and we are just taking it one step at a time.